Bilateral after DCIS diagnosis

[kaylee]

I went in for my regular mammogram July 9, got diagnosed with DCIS and had a bilateral mastectomy Aug 5th of this year.  I was told that they thought that I had DCIS in more than one spot in the left breast.  My path report after surgery showed residual high grade ductal carcinoma in situ with necrosis and focal calcification posterior margin is 6mm anterior margin is 3mm extensive adenosis with focal calcifications.  nothing in the right breast.  I opted to have the right breast removed.  I have to agree with the other women talking about their bout with DCIS.  When I asked two different doctors to please explain my path report, their comments were "you are not going to die from this."  When I asked if it was truely cancer and not pr-cancer, the doctors and radiologist became rather short with me and told me that it was most definately cancer.  I am not upset about loosing my breast, although I would rather have my real ones back, I would just like for some one to tell how serious this really was.  Am I going to die with this?  Am I truely cured from this now that I have had both breast removed?  What are my chances of this coming back and being an invasive cancer?  I have had reconstruction on my left breast and I go back in in Jan. 2003 to have the right breast reconstructed.  I feel almost guilty when I talk to women that have been diagnosed with invasive cancer.  But I am still scared and just feel like my surgeon, regular doctor, and radiologist didn't want to talk to me about this after my surgery.  I feel that since I lost both my breast, I am entitled to answers.

[CCF-RN,MSN-JS]

Dear kaylee, Ductal Carcinoma In Situ (DCIS) can be described as a pre-cancer.  The abnormal cells are confined within the duct of the breast and have not “invaded” outside of the duct.   We really don’t know how long it takes for DCIS to get to the size it is.   Classification systems have been developed to give an idea about the likelihood of DCIS recurring.  The Van Nuys Prognostic Index is the system used currently but is not foolproof.   The score will be a number between 3 and 9, with 9 as the worst (worst meaning likelihood of recurrence).  This Index looks at tumor size, margin width as well as pathological classification.  Based on the information above your score would total 8. What this score/information helps is for decision regarding further treatment from biopsy, you have had the bilateral mastectomy which most of the time will be more than adequate.

Since DCIS is not capable of spreading there is no reason to use chemotherapy.  DCIS doubles your risk of getting cancer in the other breast, but since you have had the other breast removed use of adjuvant hormone therapy (tamoxifen) doesn't make sense because the use of that is also in terms of preventing recurrence in the opposite breast.

For larger tumors (greater than 5 centimeters) some experts think removing lymph nodes to check for possible disease spread.  But in small areas of DCIS (such as yours 1.6cm) it is not necessary because precancer doesn't spread at this stage.  

In her book,  “Dr. Susan Love’s Breast Book”, she gives a good explanation of DCIS.  She does this in language for the lay person.  This might be a good source for further reading on the topic, for background, and for having discussions with your doctor.  

I hope this information can give you some peace of mind.

[PPLC2]

I fully understand how you feel about wanting information.  It sounds like you are frustrated with the people you pay for services and trust with your life. I wish I had the information you are wanting but I am not a professional. I would probably schedule a followup consultation with a list of questions in my hand and ask them one a a time.  One of them would be, What are the chances of this returning on a scale of 1-10....you must be very firm before you begin the conversation and let him know that you want the truth from him as a professional.   I will pray for you, and already have just that moment.  

[kaylee]

I greatly appreciate your input.  It makes me feel a lot better, but I do have one more question that has been bothering me.  When I had my biopsy and ended up with residual DCIS, what are the chances that the DCIS escaped from the duct through the small hole that was made by the biopsy?  Maybe I just don't understand enough about this, but I have so many fears.  Am I just being silly about this whole thing?  Tell me the truth.  I guess, that I have always been so healthy, and when I was diagnosed with this, it was like someone had punched me in the stomach.  I didn't think this could ever happen to me.  I hate to sound like a hypercondriac (sp), but I do worry about this.  Thank you.

[filmgrrrl]

I too had a bilateral mastectomy after DCIS diagnosis (extensive in left breast) in August (the bilateral was my choice since my right breast was ok) I had immediate single-stage reconstruction and am very happy with the results....As for DCIS, from my understanding and the research I've done it in itself is not an "invasive" cancer...the cells, even if they "escaped" during a biopsy would not be capable of  causing an invasive cancer...the cells themselves have to transform, etc in order to become invasive (which they can do in a certain percentage of cases-particularly with certain agressive comedo grades)....Also, the survival rates for DCIS are excellent...upwards of 98-99% when treated with mastectomy (and similar results for those treated through lumpectomy and radiation)....both my surgeon and my oncologist said I have an excellent chance of no further problems...there is, of course, no such thing as a guarantee....

[kaylee]

Thank you for your imput.  It's nice being able to talk to someone with the same thing as me.  Did you have the flap done for reconstruction?  I had the back flap done on the left and will be doing the right in January.  I was diagnosed in July and surgery in Aug. 5th.  When were you diagnosed?  I guess the reason I am a little perinoid is because I had my breast surgeon and my plastic surgeon and I did not have an oncologist.  My breast surgeon did not feel that I needed one nor did I need any other type of treatment as far as tamoxifin (tamoxifen), chemo, or radiation.  I am very thankful.  Thank you again for your positive input.  It really helped me alot.  Let me know what kind of reconstruction you had?  Nice talking to you.

[filmgrrrl]

Hi Kaylee:  I'm glad to be able to share my experience.  I was diagnosed in August after a routine mammogram showed possible microcalcifications. The stereotactic biopsy revealed DCIS in left breast.  After much research and for my own piece of mind, I decided to be agressive and have a bilateral (very much my own choice) with immediate single-stage reconstruction.  My surgeon did a skin-sparing mastectomy (and sentinel node biopsy) and the PS then placed adjustable implants partially under my chest muscle.  The implants were filled at 300 cc at surgery, then 100 more cc was added during two fills-no exchange needed...I'm very content with the results. I will have my nipples added soon... As for the oncologist, etc--I did see an oncologist 6 weeks after my surgery as a "dot the i's/cross the t's" sort of thing.  She spent an hour with me and repeated what my surgeon had told me....that I had basically a 99% chance of having no further difficulty and that chemo/tamox, etc. would obviously not add to my odds in any signficant way.  The negative effects of any additional therapy would greatly outweigh any potential gains (1% is a pretty small number).  Her input did help me emotionally put to rest much of the anxiety I felt.  In the end I guess I feel very lucky to have had the DCIS discovered before it could become truly invasive (mine was pretty extensive and had a lot of Comedo necrosis--there was also one area that had started to become micro-invasive but fortunately it was low-grade and tiny-under 1.5 mm)....I will be returning for checkups with my breast surgeon every six months for checkups.  Take care!

[filmgrrrl]

should have said "peace of mind" in my last post : )

[kaylee]

Thank you so much.  You have definately given me "peace of mind."
Happy Holidays to you and your family.

[dcbell]

Go to http://bcsupport.org/
This site can help you understand every question you have and the ladies are so wonderful and very supportive.

[kaylee]

thank you dcbell for your infor, I'm going there right now.  Appreciate your help.

[dcbell]

Kaylee,  I am looking for you on the other site.  Just start posting.  I know you will find your answers and support you that we all need.  Donna

[kaylee]

I went into the first chat room in bcsupport.org today (sunday).  Talked to 3 or 4 gals that had very simular to me.  It was very interesting and very up beat.  I will most definately go back there again.

[kaylee]

hi filmgrrrl,  I had a few questions for you?  It's hard to chat in the chat rooms, because there are so many trying to chat at the same time. Were you a smoker, and if you were do you still? Did you have a trauma in your life a year or two before diagnosis?  Did you eat a high fat diet and have you changed your eating habits, Are you someone famous that was diagnosed with breast cancer in Aug and if you are will you leave your initials.  I won't say any names.  If you would rather not leave this information on this sight, will you email me at ***@****?  Hope to talk to you soon.  Thanks.
PS.  Went to the gym today to work out.  Gained 20 pounds since I got diagnosed and quit smoking.

[filmgrrrl]

Well, first of all, I'm not famous....Secondly, I have NEVER smoked (lost a father, aunt and friend to lung cancer)....haven't changed my diet (it's generally been good--no red meat, no junk food, balanced)...the only dramatic event (in a good drama sort of way) was having a daughter several years ago...I have been into sports most of my life, but with a kid, haven't had the same kind of time....Hope that answers your questions.

[grabung]

Hello.  In May of 2001, I was diagnosed with Infitrating Ductal Carcinoma in my right breast.  My cancer was E/R positive, Sentinal node was positve and one lymph node was also positive.  To top it off, pathology showed that I was HER2nu.  The reason for my writing is that I understand completely what you're saying about your doctors being tight-lipped.  I asked questions several times about my risk of reoccurance, the actual severity of my cancer and the likelyhood that I would die.  No one would ever come right out and answer my questions.  I think it is because everyone's cancer is just a little different and the doctors truly don't know if you'll have a reoccurrence or live until 80.  I found it very frustrating not being able to get a straight answer.  What I did do though, was purchase Dr. Susan Love's Breast Book.  I read and reread the book during different stages of my treatment when I could handle knowing the truth.  In the book, she defines - line for line- your pathology report.  Explains every term and and stage completely.  It was very interesting and sometimes too informing.  

You might try it though, it helped me.

Gina

[kaylee]

Thank you for your input.  I have read two of Dr. Loves books.  I think I'm going back to the library to get them again and re-read them.  I really do have a problem with the doctors.  Everything that I have read, including the information that the radiologist and doctors gave me said the my DCIS was a pre-cancer. But after reading their liturature, they said no-no, this is a true cancer.  I am now having a problem with, how quickly I was told to have the biopsy then waiting 3 1/2 weeks to have the surgery.  I need for a medical person to tell me if the cancer cells could have leaked out.  My final pathology report showed residual high grade ductal Carcinoma in situ which appeared to have done nothing. My problem is with the biopsy.  If the biopsy could be the cause of cancer spreading, when the cancer was already contained, why are these professional people messing with this and possibly making it worse. I did not have to have chemo, rads, tamoxofin, or go to an oncologist according to my breast surgeon.  Grant it, I had the bilateral with clear margins and no cancer in the lymph node, but if this was a true cancer instead of pre-cancer, I don't understand why they are acting as if it is nothing and why do all the professional act so suspisious by not telling us more.  What are they doing, waiting to see if they have possibly opened a new can of worms, by doing a biopsy on a cancer or pre-cancer that was contained in the duct, then waiting 3 1/2 weeks before doing anything.  What I have read is that the cancer cells can escape the biopsy hole within seconds of the test. (I didn't find this out until after my biopsy)  Is this true, and if it is, women need to be better advised by the proffesionals that are performing this task.  I know that there are alot of women out there alot worse off than me, but I might have made a big mistake by not doing my home work and asking more questions before I had the biopsy. Filmgrrrl told me that she had the same thoughts, and talked to an oncologist for her own peace of mind, but do you all see where I am coming from with this biopsy thing.

[linfin50]

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